Patient Conference on Little-Known Brain Disorder To Be Held at Nationwide Children's Hospital, August 13-14, 2011

August 5, 2011

Intracranial hypertension (IH) patients, their families and others will travel from across the country, Canada and the Mideast to attend the 2011 Intracranial Hypertension Research Foundation Patient Conference at Nationwide Children's Hospital on August 13-14, 2011. The two-day meeting will feature leading IH physicians and researchers, including several from Nationwide Children's Hospital and The Ohio State University in Columbus. The Intracranial Hypertension Research Foundation (IHRF), a Vancouver, WA-based non-profit, is the conference’s organizer.

Intracranial hypertension (IH) is a serious neurological disorder that literally means the pressure of cerebrospinal fluid within the skull is too high. Anyone can develop IH at anytime in life, though children represent one of the fastest growing groups of IH patients. The origins of the disorder are unknown, though some scientists believe that its cause may involve a blockage or obstruction to cerebrospinal fluid drainage from the brain.  

People with chronic IH can suffer severe pain, vision loss, blindness and neurological impairment. It is often a life-long and life-altering illness. A hallmark of the disorder is an excruciating headache, which is frequently misdiagnosed as a severe form of migraine headache. IH can occur spontaneously (idiopathic IH) or with an underlying cause (secondary IH).

One of IHRF's main research projects is the IH Registry, the world's first patient registry for chronic IH. A recently published IH Registry study found that, in 2007, more than 25,000 people were living with idiopathic IH in the U.S. The study also found that the total economic impact of idiopathic IH in 2007 in the U.S., exceeded $444 million.

Information from a new research collaboration between the Pediatric Pseudotumor Cerebri Clinic at Nationwide Children's Hospital (pseudotumor cerebri is another term for idiopathic IH) and the IH Registry will be presented at the August conference. The Nationwide Children’s Pediatric Pseudotumor Cerebri Clinic is the first comprehensive clinic for children with IH in the nation. The study involves examining data on treatment and outcomes in children with idiopathic IH from both the Registry and the clinic, which could lead to an improved understanding and treatment of IH in children.

"This disorder was first documented in the 16th-century. It’s been around a long time but it’s still virtually unknown,” says, Emanuel Tanne, M.D., the president and co- founder of IHRF. “The conference at Nationwide Children's Hospital represents a united effort to bring about change and promote research."

The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting and funding medical research of chronic IH to find better, more effective treatments and a cure for IH. The Foundation runs, in partnership with Oregon Health & Science University, the IH Registry, a neuro-imaging library and a donor program. Persons interested in attending the 2011 IHRF Patient conference can still register for the conference at www.ihrfoundation.org.

About Nationwide Children's Hospital

Named to the Top 10 Honor Roll on U.S. News & World Report ‘s 2018-19 list of “Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit freestanding pediatric health care systems providing wellness, preventive, diagnostic, treatment and rehabilitative care for infants, children and adolescents, as well as adult patients with congenital disease. Nationwide Children’s has a staff of more than 13,000 providing state-of-the-art pediatric care during more than 1.4 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded freestanding pediatric research facilities. More information is available at NationwideChildrens.org.